After recovering from CMV and returning to school in March, Bodie has thankfully had a fairly uneventful period of growth and rest…until this past week, when his weekly labs showed a marked decrease in his platelets, prompting his transplant team to insist that we re-engage with the Hematology team down here in San Diego even though he felt fine. And then this week, when his platelets just tanked, and he ended up becoming symptomatic, leaving school with nausea and vomiting. And so we now find ourselves in the Emergency Department at Rady Children’s awaiting admission to the hospital.
What we know: Bodie’s labs last week showed a critically low platelet level. For frame of reference, a “normal” platelet range is 140,000 – 400,000. After slowly trending down the past few months, Bodie’s dropped to 39,000 last week. They dropped even further yesterday, down to 9,000.
As a result of his critically low platelet levels, Bodie has developed petechiae (tiny, flat, red or purple spots on the skin caused by minor bleeding under the skin) on his arms, legs and trunk. You’ve probably seen (or had) petechiae before as a result of illness or trauma to a body part. In Bodie’s case, his platelets are not clotting his blood properly, so he’s experiencing bleeding into his tissues. It’s pretty gnarly looking (the small clusters of spots aren’t too noticeable unless you’re looking for them, but the streaks on his legs, back and upper arms look like a bad case of road rash, except that they’re completely under the skin). The good news is that they’re not painful at all, and he doesn’t really notice them unless we point them out.
You can see he spots on his calf and the streaks on his back in the pictures below.
Along with petechiae, most patients with platelet levels this low experience bleeding in their gums when they brush their teeth and bloody noses, along with being at risk for head and GI bleeds. Luckily, Bodie hadn’t had any other symptoms. Until today after lunch, when he emailed from school letting me know that he felt nauseas and had a headache. By the time I got to school, he had thrown up 4 times. Poor guy. After resting at home, he felt a lot better – and thankfully hasn’t had any nausea since. But given his critically low platelet levels coupled with the vomiting and headache, his team wanted him seen at the ER. A CT scan ruled out a head bleed, thankfully. But both his Stanford Transplant and Rady’s Hematology team are in agreement that they want him admitted until he’s not so critical.
What we don’t know: We don’t know yet why his body is attacking and destroying his platelets, but that appears to be what’s happening. It’s not uncommon to have this happen with organ transplant recipients and it can happen for any number of reasons, including a reaction to viral infections, medications, or damage to the bone marrow itself. We will be working with hematology to try to determine which camp Bodie falls into so we know how best to treat it.
Where do we go from here: He is being admitted to the hospital tonight, under the care of the Hematology/Oncology team. They will run a repeat CBC to check his platelets again, and then do a platelet infusion. (On a side note, I donated blood and platelets for years, so it’s really coming full circle to me to be on the receiving end of those critical donations.) The platelet infusion should bring his levels back up and help him feel better as well. But because we don’t know what’s causing his levels to drop, his body is likely to attack those new platelets and destroy them as well. So they may be coupling the platelet infusion with an IVIG infusion. And they’re planning to run more tests to try to get to the bottom of why his platelets dropped so significantly so quickly.
How you can help: Please pray!
Pray for Bodie’s body, that it recovers quickly and we see his platelet levels increase, with no side effects from any of the treatments.
Pray for his medical practitioners, for wisdom to quickly see what the problem is and treat it effectively.
Pray that this is a short admission! This is Bodie’s last week of classes, and then he has finals next week. He has worked so hard to get caught up in all of his classes, and we’d really love for him to be able to finish his freshman year on time! And Sierra graduates next week – we have big plans for celebrating next week, with lots of family and friends in town to celebrate our special girl. We need to be out of the hospital to do that!
We’ll keep you posted as we learn more!
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